Please tell us a bit about yourself.
I joined EURORDIS in September 2022 as part of the Therapeutic Development Team as Drug Repurposing Projects Senior Manager. I am responsible for the support of EURORDIS’ involvement in projects comprising activities related to medicines research and development, access to therapies, and patient engagement in the medicine life cycle. Prior to joining EURORDIS I worked for more than 15 years as an academic researcher in the rare disease field, mainly focusing on new therapeutic approaches for rare neurodevelopmental disorders.
Outside of work, I am actually spending the most of my time with my 2-year-old little girl.
What is Rare Disease Day and what does it mean to you?
Rare disease day is an extraordinary opportunity to empower, partner and advocate for people living with a rare disease. This globally-coordinated movement was set up in 2008 by EURORDIS and 65+ national alliance patient organisation partners with the overall aim to create awareness and work towards equity in social opportunity, healthcare, and access to diagnosis and therapies for the rare disease community. Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention. So, be part of it!
Join the community and help us to build awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. Share your colors for Rare Disease Day.
You can find all the relevant material on the official website: https://www.rarediseaseday.org/
Can you tell us of any success stories that have been a direct result of Rare Disease Day’s inception in 2008?
Since its set up in 2008 the movement has continuously grown and to date more than 100 countries and regions world-wide are joining their voices and organizing more than 600 different events all around the globe. Last year more than 650 buildings were illuminated for 2022’s global chain of lights, displaying support for Rare Disease Day, raising awareness for people living with a rare disease, and spreading hope and colour all around the world. This is the greatest success story I could think of. Since its creation Rare Disease Day provides an incredible and ever-expanding energy and focal point that truly enables rare diseases advocacy work to progress on the local, national and international levels.
Learn more about REMEDi4ALL platform here.